James seems to be adjusting to his "PEG" tube and his liquid feedings. He has never really complained about any of it, and the only time he mentioned pain was the day after it was put in (last Wednesday), when he seemed to have a lot of gas for some reason. We took him to Livermore at about noon today, and we were met by his main caregiver. Tomorrow (Friday) the home health nurse comes to check on him and weigh him (as well as a carpet cleaner and an exterminator for the ants attacking his bagels). James is getting 1mg of Ativan twice a day as a prophylactic against seizures; that seems to be working. Three milligrams in a day was unnecessarily high, and 1/2 mg twice a day is not enough, and we found all this out in the hospital. James is sleepy pretty much all the time, but that will be okay while we get the latest med up to full strength.
Please pray for the following: (1) that the new med, Trileptal, works when it gets to full strength in a few days; (2) that we will be able to wean James from Dilantin, which is causing tremendous swelling of his gums; (3) that he will eat, eat, eat and gain, gain, gain; (4) that his parents will have hope and will get some rest. B
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